[Leealli]

My Mom's Inpatient Stem Cell Transplant at Roswell Park

by Leealli on Thu Dec 11, 2014 3:55 pm

Hi everyone. My name is Allison, and tomorrow my Mom is having an autologous stem cell transplant. I have read all the threads written by patients during their transplant and have found the information to be very valuable. I have scoured the internet and these forums for information and have been very grateful for the openness in which the information is provided and shared.

I thought a perspective from the caregiver might be useful and perhaps I can fill in some of the gaps that the patients aren't able to give during some of the tough times. As far as I am concerned, knowledge is power, and with a disease that makes you feel so powerless (as a caregiver), the more information and advice I can find - the less helpless I feel.

Background info of my Mom


• Diagnosed in July with Stage 3 multiple myeloma, IgA
• Myeloma was discovered when an x-ray was taken of a sore leg that showed a femur fracture. Lytic lesions were seen on further testing and eventually the multiple myeloma was diagnosed.
• The cytogenic analysis is something I have not fully grasped as I missed the first meeting with the doctor when that happened. I just discovered that my Mom is blurry on it too. I will research that! But whatever it is - it was seen as good.
• 70 years old. Generally fit - before her leg fracture, traveled frequently, exercised at Curves several times a week and worked per diem as a nurse practitioner.
• Otherwise healthy. Family history of heart disease, but none herself.
• Treatment center is Roswell Park Cancer Institute in Buffalo, NY as an inpatient.
• Three rounds of chemo: Revlimid, Velcade, dex (RVD) - that last round ending just over a month ago, at which time the M-spike was undetectable. Since she has to travel 100 miles for treatments - the long days were tiring. Developed some neuropathy but had very few other side effects.
• Two doses of Zometa before it was stopped in preparation for the transplant. Both doses gave her nausea and several days of feeling flu-ish.

Today is Day -1

Checked in to the hospital and arrived on the floor at 7 a.m. There are three wings here that are completely HEPA-filtered – hallways and rooms – allowing the patients some freedom. Right away, we had about 30 minutes to set up the room: we had a soft bed pad, comforter, pillow, clothes, and some Christmas decorations. We have been planning this and what to bring for a quite some time.

• 7:30 a.m. - She was asked to get into a hospital gown so that they could get height, weight and do a skin check. Then she was allowed to get dressed and they did vitals (which get done every 4 hours).
• Then she was hooked up to saline for 2 1/2 hours and met her IV pole, which will be her constant companion. She had her central line put in yesterday at the pre-admission.
• While the nurse was hooking her up, she talked about some of the infection control measures - the green caps for the central line, and the CHG wipes (which Steve Mohr talked about) to be used after every shower. Another nurse came in with the menu and explained the TV and the phone and about the massage therapist!
• 9:00 a.m. - My Mom did 11 laps (33 laps = 1 mile = 1.6 km)
• 9:45 a.m. - The physical therapist came in - Told my mom she needed to do a mile a day, and gave her 3 exercises to do each day: 25 steps ups on a little step that is in the room, 25 sit to stands, and 10 minutes on the nu-cycle out in the hallway (sort of a sit down ellipticycle machine) There are is also a treadmill in the hallway but, because of the number of lytic lesions my mother has, the cycle was preferred. The PT stressed getting into a routine NOW while my mom is still feeling good so that, when she is not feeling good, it's easier to follow the routine. While the PT was in, no less than 4 other people came by, all leaving to come back later.
• 10:00 a.m. - The first bag of saline was finished and a second went in along with an anti-nausea drug via infusion. She also received a pill to protect her liver (which she will get 3 times a day.)
• 10:20 a.m. - More anti-nausea, a low dose of dex and a Lactobacillus pill. Also, the tubing for the melphalan was prepped.
• 10:35 a.m. - The occupational therapist - Reviewed the skeletal survey from last week determining the use of low resistance. After a grip test - which we all had to do just to see! (Turns out my Dad is freakishly strong). She was given upper body exercises with a small weight: bicep curls, lateral raises, shoulder presses and tricep extensions. Also, a hand gripper and some exercises with a band.
• 10:45 a.m. - Melphalan was put in. Though this hospital doesn't mention it, she did have ice both before and after, having read about many places doing that. Can't hurt.
• 11:15 am - Social worker came in. Just checking. Making sure there were caregivers, had a place to stay after discharge (we do not live in Buffalo) and general mood and concern questions. She is also going to get the artists in residence to come and teach my Mom to knit - which she has been wanting to do.
• 11:25 am - The nurse, who had been in and out all morning, was finally able to do her admission questions and medications review and talk about life on the floor and some details about tomorrow's transplant.
• 11:50 am - Vitals again.

It is 2:30 p.m. now. Lunch has been had. She has completed her mile and done half of the exercises and 10 minutes on the bike.

• While on the bike, the dietician came by and checked in. Also, the nurse gave more meds - for liver protection and for neuropathy. Also, two tubes to mix up and swish out her mouth - she will get this 4 times a day.
• 2:35 p.m. - Nurse came in with Lasix. Since arrival ALL Input and ALL output has been monitored and she is running a bit behind.
• 2:40 p.m. - Vitals.

It is clear that there is not going to be much rest here!

That's a start. Day -1 has been very full so far. I hope this is helpful.

Also, it's snowing ... It is Buffalo after all.

---

Moderator's Note: If you find Allison's postings in this thread helpful, you may also want to consult the other threads here in the forum that document stem cell transplant experiences. An up-to-date list of those threads can be found at the bottom of the

"Useful links to other existing forum discussions"

posting in this "Treatments and Side Effects" part of the forum. Just go to the "Useful links" posting and, at the bottom, you'll find a list of all forum threads with postings people have done during the transplant process.

[kullybunnny1]

Re: My Mom's Inpatient Stem Cell Transplant at Roswell Park

by kullybunnny1 on Thu Dec 11, 2014 4:41 pm

Good luck to both you and your mother, Allison. Reading your post brought back recent memories of my experience. I forgot to mention the small kitchen room with a refrigerator where your Mom can store approved snacks/drinks.

You'll both do well!

Kully

[Leealli]

Re: My Mom's Inpatient Stem Cell Transplant at Roswell Park

by Leealli on Thu Dec 11, 2014 4:56 pm

Thanks, Kully. And for all of your advice. Not only that, but that "nutrition" room is stocked with snacks that the patients can have - yogurt, pudding, ice cream. Everyone has been SO nice. Her room is not the lakeview side - but the other. But the big window is nice and we can watch the snow swirl around.

[mikeb]

Re: My Mom's Inpatient Stem Cell Transplant at Roswell Park

by mikeb on Fri Dec 12, 2014 1:08 pm

Hi Allison,

Thanks for all the information! I'm sure it will be helpful to a lot of folks. Your details sure brought back some memories to me from when I had my SCT. You mentioned the IV pole. Mine had the brand name "Patient Pal" on it. I used to joke with my wife that it was anything but my pal! I was so happy to finally get disconnected from it at the end of my hospital stay.

I have a bunch of relatives in the Buffalo area. In fact, two cousins who have both been treated (successfully!) for breast cancer at Roswell Park. Your Mom is in good hands there.

It sounds like they have been doing all the right things for your Mom so far, based on my experience and things that I have read. Just a couple of things I would like to emphasize from my experience. Exercise, exercise, exercise! There will be days when your Mom doesn't feel like doing anything, but those are the most important days to be sure and get some exercise, even if it is only riding the bike thingy for 1/2 hour. Every bit helps. Second, doing the mouth rinses frequently really helps prevent mouth sores. I was good about that, and didn't get any sores. Definitely worth the extra trouble.

Best of luck to your Mom and to you, please keep us posted on how things go for her.

Mike

[Leealli]

Re: My Mom's Inpatient Stem Cell Transplant at Roswell Park

by Leealli on Fri Dec 12, 2014 4:05 pm

Day 0

My mom had a pretty good night thanks to the oxycodone. She said it helped her fall asleep after the constant interruptions of nighttime on the ward. They take blood work at 3 a.m. and brought her the results at 5 a.m.! She had to have a magnesium drip as she was running a little low. She had a slow start this morning being a bit blurry from the oxycodone, but has had a light breakfast, got dressed and walked a 1/3rd of a mile. The physical therapist was on the floor and impressed to see her walking – today is her one day off from the list of exercises.

I should note that yesterday, late afternoon, she was given an injection of a blood thinner. I thought this was interesting since the chemo was going to lower her blood counts and she is actually more likely to bleed. The doctor said that it was a good point but that he wanted to err on the side of caution for the central line placement to prevent any complications with that.

Transplant Time

The transplant procedures started at 11 a.m. with a dose of Benadryl (diphenhydramine) and Ativan (lorazepam). Then 15 minutes later they had her get up to use the bathroom then at 11:30 a.m. the cells arrived. All those meetings and in all the literature it says 1 to 2 hours for the transplant. The nurse said the average is 30 minutes – depending on volume. There are 133 ml of cells – so it was quick. 15 minutes. If you are interested – the number of cells today were 260 x 10 the 8th power. That’s two bags of very pink cells that look a bit like a cosmo.

The Stem cells arrive.

IMG_6668.jpg (13.57 KiB) Viewed 4932 times

Stem Cells are very pink!

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The bags are wheeled-in in a liquid nitrogen container and then each bag was dipped in a warm bath and then hung on the IV. The first bag took 8 minutes and then the second bag went in. She had a lollipop to help with the throat tickle that can be a consequence of the DMSO (dimethyl sulfoxide) – the preservative used in the stem cells. We had been told multiple times about this DMSO that those of us in the room would notice a strange odor - like creamed corn. I didn’t notice it until near the end of the second bag and it wasn’t so bad .

Done. All the while, my mom’s Ipad was playing some Christmas music and when the nurse announced “15 minutes - all done”, it was playing the Hallelujah chorus. Very appropriate!

Another note: My mother said that every time the nurse reattaches the saline drip, she can taste it. It’s a bit like a faint taste of alcohol swabs.

For the next hour, she was kept on the monitor and the nurse came in every half hour to check vitals. My mom got comfortable under the covers and ordered lunch. She was getting pretty sleepy at this point and dozed a little. The heart rate monitor would beep from time to time and lots of people would come in very quickly – but it was always just about how she was holding her finger which had the sensor on it. Hard to nap with all the beeping!

Well – that’s the transplant. So much leads up to this day. So many pieces of paper and pamphlets, appointments and meetings; This is certainly the easy part.

My mom is nervous about what is coming. The side effects of the chemo are daunting. The loss of appetite makes her nervous. She had her hair cut very short on Tuesday in preparation for the hair loss and has lots of hats and a wig all ready to go.

I feel like we are as prepared as we can be as a family

I have attached a few photos from today.

Thanks to the Beacon folks for making my first post look so nice and to Boris for all of the advice.

The room and IV pole.

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[Leealli]

Re: My Mom's Inpatient Stem Cell Transplant at Roswell Park

by Leealli on Fri Dec 12, 2014 8:18 pm

Mike - It must bring it all back every time you read about it. Initially, my Mom decided to call her IV pole "Ivy". But pretty much, so far, just calls it annoying. She is out for a walk now to get her second half mile in for the day.

The PT here says that she shouldn't be in bed except at night when she sleeps. As you know, she has quite a list of things she has to do from the PT and the OT, and she is pretty determined to do them. Even today, the day she doesn't have to do them, she did her step ups, the walking and some weights.

I do think that when she starts to not feel well that it will be challenge. But she has told the PT and the nurses to push her.

[Leealli]

Re: My Mom's Inpatient Stem Cell Transplant at Roswell Park

by Leealli on Sat Dec 13, 2014 5:16 pm

Day 1

Today, while we play the waiting game, I thought I would tell you a little bit about the unit for the transplant patients here at Roswell. I took some photos too.

At Roswell there are 3 wings on one floor that have their own HEPA filters in both the hallways and in each of the rooms as well as a pediatric wing one floor above. Patients here, if they are doing well, sometimes get moved to the pediatric wing or to another wing on this floor if the room is needed for a new patient. Of course, the staff here is specially trained for what happens here, so those that need it most stay here.

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Just outside the doors to this wing is a waiting room. This room is intended for visitors and it has a small refrigerator, a microwave, TV, table, and some couches. Also, there is a washer and dryer (I use the term “dryer” loosely) in there, since we have to do all the laundry for the patient. Someone has donated a big container of laundry detergent for everyone’s use. This is very kind.

Once inside the doors with all the signs reminding about illness and hand-washing, the ward is shaped in a big oval with the patient rooms on the outside. Because of the HEPA filters in the rooms, all the doors have to be kept shut. The air is cycled in the rooms 4 times per hour and 2 times per hour in the hallways (someone told me that at some point). You can’t see inside the rooms unless the patient opens the blind on a window that is next to the door.

The exercise equipment is in one corner.

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And a Christmas tree sits on the other end. There is a “Nutrition Room” that has a full-sized fridge with freezer, microwave, toaster, filtered water and ice dispenser and a sink. There is also a basket of saltines, graham crackers, and a freezer full of popsicles and ice cream and pudding and yogurt in the fridge. All fair game for the patients. Patients can keep food in the fridge if it’s labeled but it is thrown out after 24 hours by the kitchen staff (unless it’s a frozen item).

Outside and inside of each room is a Purell dispenser and there are a number of hand- washing stations in the hallway for everyone’s use. Also, there are powerful antibacterial wipes in each of the rooms and by the workout equipment (you need to wear gloves to use these).

We have decided that the corner rooms are the best – there are 2 that are quite a bit larger than the rooms on the straightaways. We have one of the smaller rooms. Also, there are two isolation rooms that seem to be laid out differently – but I can’t really tell.

The nurses have two stations – one at each end – and they are in constant motion. Each RN has no more than 3 patients at a time – usually they only have 2 and there are a number of aids around, and ever-present, housekeeper and a charge nurse.

Each day, a transplant patient is visited by a PA, NP, a Fellow and/or the doctor on the floor for that week. At this time, Roswell has 4 transplant doctors that rotate a week at a time. Vitals are taken every 4 hours, eye and mouth checks in between, and constant monitoring of what can be found in the plastic hats in the toilet.

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A chart is maintained on the bathroom door of input and output. Blood work is taken every day at 3 a.m. Yesterday, it was also taken in the afternoon. I am not sure if that is the norm or if it was because my mom’s magnesium levels had been low overnight and they wanted to check (they had normalized). We ask for printouts of all the results and are already accumulating a collection.

The menu here is quite extensive and, so far, my mom has liked everything. Food is delivered in less than 30 minutes. Guest vouchers can be purchased for $5.00 in the cafeteria – these vouchers allow the patient’s guests to order of the room menu – It’s the best deal in town if you are trying to keep an eye on the finances - 1 juice or soup, 1 entrée, 2 sides, 1 dessert, 1 cold drink, & 1 hot drink. It’s a lot of food! And it allows us all to eat together.

Guest ARE allowed to eat in the patient's room but we have to throw out all of our food items outside of the room and be sensitive to their sensitivity to smells. Also, we are allowed to bring food in as long as it follows the low microbial diet and is handled appropriately (more on that later - it’s a big topic).

The room has one very nice reclining chair that is controlled with a powered controller that my mom finds very comfortable. There is also another chair that pulls out into a sort of “chair-bed” if a loved one is staying overnight. It doesn’t look very comfortable. There are LOTS of outlets all over the room, though we brought one power strip to make a few things easier to reach. A big magnetic white board had a list of the RN and Aides for the day, what “Day” it is in the process, and the list of exercises from the PT and OT. Also, each of the rooms has a camera, which feeds to the nurses station. It is on at all times.

While the walls are painted, things can be taped to the doors and closet doors to make the rooms less bland.

We are not on the side of the building that gets sun into the windows. The other side does in the afternoons. My mom is already missing the feeling of fresh air.

How is my Mom on Day 1?

She is okay. Her counts are already dropping. She was low in potassium so she was given an infusion of that. Her appetite is lessening. And she is a little tired. She slept better last night than the night before on a lower dose of oxycodone. After breakfast she walked a 1/3 of a mile and did 10 minutes on the bike and some of her PT/OT exercises.

At lunchtime, she was given Lasix (furosemide) – this is the third day of this. She is not outputting enough – the nurse mentioned “injection fraction”. I need to look that up. They have doubled the dose of Lasix from 20 to 40 from the last two days. Afterwards, she did another 1/3 of a mile.

If you have never had Lasix – you can get it via pill or infusion. My mom is getting it through infusion and within 5 minutes the trips to the bathroom begin. This will make getting any rest difficult for the rest of the afternoon.

Yesterday, after the transplant, she napped for most of the afternoon. I could smell the DSMO all day. The room smelled like it. When the doctor came in at 6 p.m., he said that the Lasix would help to get that out of her. Today, I can smell it when I am close to her, but the room doesn’t smell anymore. My Dad can’t smell it at all and neither can my Mom. I am very aware of it for some reason.

Since she still had DMSO in her system and it can be smelled on her breath, the doctor will keep her on Lasix to help her urinate it all out. DMSO can cause kidney problems so they want to get it out, which should take 24 to 48 hours.

The nurses pointed out that transplant patients have two birthdays. On transplant day they all say “Happy Birthday”. Time to start all over. Does this mean she gets a birthday gift twice a year?

She is still getting the blood thinner each afternoon via injection into the abdomen.

The hospital on the weekend sure is different than during the week. The normally crowded lobby is empty, the single person working at Dunkin Donuts looks lonely, the cafeteria is only serving pre-prepared sandwiches, soup and salad and some pizza half-heartedly warming under some lamps. At 12:30, when the cafeteria is usually bedlam, we were one of 6 people in it eating our sandwiches, which we brought with us.

It is much quieter on the floor – no PT or OT today. No visits from chaplains and artists in residence. I suspect much more napping will happen today and tomorrow for most of the patients with less activity in and out of the rooms.

Well ... I guess I had a lot to say. My Dad and I are hanging out in the room. My Dad is napping occasionally. The doctor has been in. Last night was the tree lighting here – it’s a big event at Roswell and we spent some time outside walking around, listening to Christmas carols, watching an ice sculptor work, while carriage rides and photos with Santa were available. The 75,000 lights put on a light show every 15 minutes in the evening.

-Allison

Last edited by Leealli on Sat Dec 13, 2014 11:38 pm, edited 1 time in total.

[JimNY]

Re: My Mom's Inpatient Stem Cell Transplant at Roswell Park

by JimNY on Sat Dec 13, 2014 10:11 pm

Wow, Allison. This is tremendous. This could end up being an incredibly helpful series of postings that people could read before they do a transplant. Thanks for all the effort you're putting into this.

[Leealli]

Re: My Mom's Inpatient Stem Cell Transplant at Roswell Park

by Leealli on Sun Dec 14, 2014 4:19 pm

Jim,

This is all information that I searched for on my own but couldn't always find. We did get some advice from a poster on this forum and from the volunteers in the Resource room. We had all the technical information about the transplant and the side effects of the chemo and the meds - but not the environment. Since we are from out of town, a lot of planning had to be done with packing, and any bit of info we could get was helpful.

I find myself noticing things and thinking right away that I need to add that into my next post!

Last edited by Leealli on Sun Dec 14, 2014 4:32 pm, edited 1 time in total.

[Leealli]

Re: My Mom's Inpatient Stem Cell Transplant at Roswell Park

by Leealli on Sun Dec 14, 2014 4:31 pm

Day 2

The effects of the chemo are growing more evident today. There was some little loose stool this morning which prompted a sample to be taken for the lab, and the overnight blood draw came back with lots of "L"s next to things (for Low). Her white blood count went from 7.92 to 3.12 in 24 hours. She received magnesium and potassium this morning and had her first bout of nausea in the late morning. The nurse brought Zofran very quickly (IV push). Once it was confirmed that the diarrhea was not due to a bacteria, she was given Immodium. Several hours later she was was still a bit nauseated but didn't want to take Ativan (lorazepam), since it would put her right to sleep.

However, before the nausea, my Mom got 1/3 of a mile walk done, 10 minutes on the bike, weights and step ups. And the smell of the DMSO is gone as is the puffiness in her face that came along with all the fluids. Her saline drop has been reduced which will mean fewer trips to the bathroom and she shouldn’t need such a big dose of Lasix, if any at all today.

For lunch, she had one of the supplements available on the menu, since she doesn’t have any appetite. They have a number of options – both milk-based and non-milk based (she doesn’t like milk). These all contain a lot of protein.

Supplement menu.jpg (14.71 KiB) Viewed 4748 times

It makes me sad to see these things starting to happen. I knew that they would – but I was hopeful that her experience with all the side effects would be minimal. I got some hope out of some of the stem cell transplants descriptions on these boards that seemed to go “well”.

Just yesterday, my Dad and I brought in some nice soft toilet paper. The toilet paper here is pretty rough and it turns out that it was good timing. We will be keeping a close eye on the supply.

Misc. things and observations

Each day, an Aide comes in to check that she used the CHG bathing wipes. These remove germs that live on our skin even after a shower.

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Back in September when my mom started on the Revlimid and Velcade, we received lots of materials about taking care with germs: i.e., paper towels for drying hands at home in the kitchen and in all the bathrooms (we have gone through a LOT of paper towels), no bar soap, etc. I have stopped touching door handles, crash bars, elevator buttons – so now it’s a habit not to touch anything here in the hospital. My long sleeves come in handy for this.

I did 2 loads of laundry today. We are doing more laundry than we expected just to keep things neater in the limited space of the closet.

For those of you starting your lists of things to bring: My Mom brought her pillow and a number of pillowcases. The pillows here are very sad excuses for pillows. Before coming here, we washed the pillow as recommended. The other option is to buy a new one. We also have a stack of washcloths and towels from home, as what is here is very rough and somewhat smelly. We change these out every day.

Based on the recommendation of a past patient, my Mom brought a twin sized memory foam pad and waterproof cover to put over it. All of this fits under the hospital provided sheets. This turns out to have been a very good idea. She actually finds the bed very comfortable.

We brought a few small basket to help keep things organized in this small space. They are handy for the menu, glasses, chap stick, etc. And one in the bathroom on the sink to organize things in there.

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And hangers: In this hospital, there is a small amount of space for hanging but no hangers. I am glad we brought them.

When this is all said and done, my Mom and I plan to put together a Survival List based on what we have learned.

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I apologize for the blurriness of the photos. It's because I am reducing the resolution to make them smaller.

And, it’s game day! We are in Buffalo. The Bills are playing at home and my Mom is a fan. The hotel was full of people in town for the game and, since the game is sold out, it’s on TV here. A nice distraction for the afternoon. And so far, they are in the lead!

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